eBy Nicci Stein, The Teresa Group
U=U for sexual transmission (undetectable=untransmissable) is the most exciting game changer to come along since combination therapies were introduced over twenty years ago. The U=U movement is gaining traction worldwide and has the potential to deconstruct much of the stigma that has surrounded HIV from the beginning. U=U for sexual transmission was born out of robust scientific evidence but HIV transmission through breastfeeding differs in many ways, including a far higher risk associated with breastfeeding versus sexual exposures. The evidence at present does not justify inclusion into U=U and this nuance is lost in the central messaging of the campaign.
Perinatal prevention and infant feeding guidelines in low and high income countries are completely different particularly for women who move from one setting to the other and whose respective doctors give them vastly different instructions about how best to avoid HIV transmission to their babies after birth. In settings such as Canada, the recommendation is to avoid breastfeeding altogether and free infant formula is made available to HIV+ Moms. In countries where there is a greater risk of infant mortality from diseases associated with a lack of clean water and reliable formula supply, the guidance is to exclusively breastfeed for 6 months. Understandably, confusion surrounds the issue of infant feeding and HIV and the field is fraught with seemingly contradictory messaging.
Added to this is the scandalous and manipulative history of Nestlé's marketing of infant formula in the 1970s and the emergence of a breast is best culture in response. Companies such as Nestlé have a lot to answer for and the struggle is still very much alive today. Unfortunately this has polarized the issue of infant feeding in general and these issues are also very much in play as we navigate them in the field of HIV.
We must be careful not to fall into the trap of this polarization as we move forward and start to entertain the idea that someday we may have enough evidence to support zero-risk breastfeeding for HIV+ Moms and be able to offer an equal choice to Moms to breast or bottle feed. I dream of that day, but we are not there yet and women living with HIV are getting caught in the fray.
It can be a shock for women living with HIV to discover that they are expected to feed their babies with formula. There can be many questions and difficult and conflicting emotions. In our practice in Toronto, clients face a multitude of personal, cultural and familial issues related to breastfeeding which can make it difficult to explain to others why they are feeding with formula, without disclosing their HIV status. They can feel trapped. Either they formula feed, facing challenging situations with family and friends, or they breastfeed without telling their doctor and risk passing HIV to their babies through breastmilk. The more isolated and stigmatized a woman feels, the more difficulty she will have grappling with these issues and accessing the support she needs.
On the other hand, some women are relieved to hear that formula feeding is being recommended and report feeling very anxious about breastfeeding. Sometimes, this is related to the experience of trauma and sexual violence in the person's past but could also be for a number of other reasons. In general, women who do not want to breastfeed face judgement from a wide range of others, including family, friends, healthcare practitioners and even strangers. Nowadays it is almost impossible to avoid breast is best messaging. The breastfeeding movement has made enormous strides and for some really good reasons. However, the judgment attached to these messages can feel extreme. "I'm just trying to do the best for my baby and I'm made to feel guilty and a bad mother" explained one Mom who talks about the "tyranny" of the breast is best culture.
Women need to be heard. "It's not about what the doctor says" said one Mom "it's about me feeling that I have an opportunity to talk about how I feel about this. Of course I want to do the best for my baby, I don't ever want my child to get HIV and I will do anything to protect my child, but I don't want to be told what to do without recognition of my struggles."
Women say they are filled with guilt – guilt that formula feeding may somehow disadvantage the baby, or conversely guilt that by breastfeeding, the baby may be exposed to the risk of HIV infection. Unlike sex between consenting adults, the responsibility for their actions lies entirely with the parent(s) as the baby has no ability to decide or even weigh in on the discussion.
Counselling around infant feeding can last weeks or even months and ideally happens during pregnancy, well before the baby is born. Given their busy schedules and short appointment times, perhaps doctors and nurses are not always best placed to have these more in-depth conversations that can be complex and difficult. Making solid connections to community organisations and other women who have been through these struggles is a vitally important ingredient. Once a personal resolution has been reached, women can feel confident and powerful – a very different place from where they began.
So how do we as service providers ensure that we are keeping the Mother-infant dyad right in the centre of our care? How do we avoid falling into the trap of pitting the rights of one person against those of another? We have to give Moms accurate and unbiased information. We have to really listen and if that's not possible to do personally, then refer to someone who has that capacity. We have to hold women in that place of discomfort, grief and guilt – sometimes a seemingly impossible place to be – and support them until they reach their own personal resolution of their situation. It takes time, care and love and we have to be able to give that in spades.
Nicci Stein is the Executive Director of The Teresa Group, Canada's oldest community-based charitable organization specifically serving children affected by HIV and AIDS and their families.
This blog is part of the blog series: Barometer Rising: No time to backtrack the fast track to ending HIV as a global health threat by 2030 by the Interagency Coalition on AIDS and Development (ICAD) in recognition of World AIDS Day (1 December). The series features a selection of blogs written by our member and partner organizations. Contributors share their broad range of perspectives and insight on the right to health within Canada and globally to critically reflect on the response to HIV knowing we are now just 2 years from the 2020 Fast-Track targets (90-90-90) and just over a decade away from the 2030 Global Goals for Sustainable Development (SDGs).
Are we on the right track or are we on the back-track?
Disclaimer: The views and opinions expressed in this blog series are those of the authors and do not necessarily reflect those of ICAD.